Archive for the ‘Caregiving’ Category

Authors Nader Robert Shabahangi and Bogna Szymkiewicz use the term “forgetfulness care” when discussing issues of care for people having the diagnosis of dementia or Alzheimer’s Disease.

In this section, they discuss the anticipatory grief that caregivers can go through:

Feelings of Loss

“If you feel close to a person who develops symptoms of forgetfulness, you are likely to experience feelings of grief and loss — not only after a person dies, but also as the condition progresses.

This is sometimes called anticipatory grief and includes:

  • Loss of a person you knew before.
  • Loss of a relationship you liked
  • Loss of a person’s former self.

Friends and family members may experience:

  • Loss of future plans (going on holidays next year, taking care of the garden together)
  • Loss of companionship and support.
  • Loss of a lifestyle they once had together (reading newspapers and sharing comments every morning, going to the opera once a month, eating lunch at the kitchen table).

Caregivers may experience:

  • Grief and a sense of loss when they see pain and suffering on a daily basis.
  • Sadness and anger as a person with forgetfulness symptoms slowly goes to another realm.

Grieving for a person with forgetfulness symptoms alternates:

  • Between despair and strong hope that everything will return to the way it was,
  • Between acceptance and non-acceptance.
For THE BEST information about forgetfulness diseases, hop over to Alzheimer’s Speaks Blog.  Lori is incredible and her blog is one of the most valuable resources out there!!!!
Will post a link when Lori and I sit down and talk about grief issues related to loss connected to losing someone you love who has lived with Alzheimer’s and dementia.  Stay Tuned!

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This is probably one of my favorite “go to books” when I hear of someone dying of something like cancer, ALS, or living with dementia and other forgetfulness disorders, etc.

Our hospice used to give this book to any family that was open to it.  Maggie Callahan has been a hospice nurse for a long time and has great insights into the journey toward dying and death.

Here is an excerpt:

“Caring for a dying person is hard work, especially at home.  There are medications to be given, often around the clock, personal care to be done, meals to prepare, and sometimes dressings or treatments to do.  And despite all of this, the tide of usual day-to-day responsibilities continues:  bills must be paid, children must be cared for, laundry must be done.  Families are frequently tired and it’s a massive job merely to focus on a particular day or a given moment.  The future holds grief and loss, so many families and friends avoid looking ahead.”

~~ Maggie Callahan and Patricia Kelly — Final Gifts:  Understanding the Special Awareness, Needs, and Communication of the Dying.

There is a fine line with being present at the bedside, planning for the future, and forgiving the past if necessary.  We are embodied beings, living in our temporal lives.  We cannot ignore any of these three time elements.

But we can learn to a balancing dance between them and often we find that it is in being fully present to right here and now, accepting our fatigue and frustration, not glamorizing the past, and not fretting about an hour from now, that we find some sort of peace.

No one can tell you not to live in the past or future. . . it doesn’t work to just say that… but if you can practice living now, with the awareness of the past and future that you may have more peace.

Like when we are on the cushion, we bring our full attention to the experience of the cushion.  But the past, future, sensations, thoughts, feelings, etc come up. We lightly touch them and let them go.

It is the same with caregiving and grieving. . . we attend to here, whatever here and now is.  We don’t push away what comes up from the past or the future but we don’t entertain those things either.

Don’t set out the Pepperidge Farms cookies and a pot of tea for these things that come up.  You want to foster equanimity toward them, not make best friends with them.

Make friends with what is right now and know that when things from the past or future come up, they will — that’s how your brain is designed.  Acknowledge them and let them drift away.

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Excerpt from Doug Smith, MDiv, Caregiving:  Hospice-Proven Techniques for Healing Body and Soul

“The following exercises can help caregivers relieve some of their own stress with a few laughs and reinvigorate themselves so that they can facilitate some humor for those in their care.

If caregivers are under stress, we cannot meet the urgent needs of the people in our care.  And we are hardly in the mood to bring humor to them.  This activity can divert us from our own stressful state:

Pull out the following list of activities whenever stress seems overpowering.  Complete each activity in the order listed as fast as you can.  If you reach the end of the list and still feel stressed, repeat the list in reverse order.

Raise your eyebrows twenty times.

Shout five words that begin with the letter “Z”.

Rub your tummy ten times counterclockwise and ten times clockwise.

Roar like a lion.  Bark like a dog.  Purr like a kitten.

Clap your hands ten times.

Throw something up in the air and catch it — twelve times.

Stick your tongue out five times.

Make five different silly faces.

Shout five words that begin with the letter “Q”.

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The next couple of posts are from Deeper into the Soul, a book on looking at Alzheimer’s & Dementia Care.  Take a look. . . .

“According to Arnold Mindell and many spiritual traditions, we can talk about three levels of reality, or realms of perception:

Consensus Reality:

This is our everyday reality:  the world we agree upon, where we notice similar things and give them names.  Consensus reality is considered the most “real” by most people. Here we agree on what exists and what does not; we share perceptions, even if our opinions and judgments differ.  For example, we look at a table and agree that it is a table.”

From:  Deeper Into the Soul:  Beyond Dementia & Alzheimer’s Toward Forgetfulness Care by Nader R. Shabahangi & Bogna Szmikiwicz

Note:  I will be away on retreat for the next week.  I wish you all well and I hope you enjoy the articles that I have left in my stead.

May sorrow show us the way to compassion

May I realize grace in the midst of suffering

May I be peaceful and let go of expectations.

May I receive the love and compassion of others.

With love and deep gratitude, Jennifer

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from A Caregiver’s Challenge:  Living, Loving, Letting Go by M. Schacht

You have the right to:

  • be comfortable with your physician.
  • a second opinion (or third).
  • interview a physician.
  • refuse a particular therapy.
  • refuse medication.
  • think things over and not rush into action.
  • your anxiety.
  • see your records.
  • copies of letters and x-rays.
  • know what side effects may come from sugary, medication, radiation, or chemotherapy
  • have a family member or other support person with you when a plan of action is being explored or explained.
  • make your own decision and not to succumb to pressure.
  • resist emotional blackmail.
  • explore alternative therapies (Herbs, acupuncture, etc.).
  • remain silent.
  • chatter.
  • seek a support group.
  • dignity.
  • grieve.
  • manage your own case!

Don’t think you have to be a patient with a life-limiting illness for this to apply to you.  Remember, if you aren’t your own advocate, who will be?  Who else has your best interest at heart, the way you do?

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Signs of Compassion Fatigue or Burnout

  • Perfectionism – focuses on what needs to be improved, rather than on what has been accomplished, feel like you never succeed at anything
  • Never-ending tasks — work that appears to lack both a beginning and an end, no closure, therefore, feel like nothing is completed
  • Multiple roles – feeling of being overwhelmed by playing numerous roles at work and in personal life
  • Substance abuse – marked increase in consumption of alcohol, drugs, cigarettes, and caffeine
  • Loss of self-esteem – decrease of self confidence
  • “Negative” Emotions – anger, anxiety, dissatisfaction, guilt, irritability

Related Resource:

The Five Things We Cannot Change by David Richo

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Exercise Promotes Stress Reduction

  • Exercise helps release built up tension from the body
  • Exercise can give you a venue for releasing happy tension as well
  • Exercise releases endorphins and other “happy hormones” in the body, promoting a feeling of well-being
  • Exercise helps promote overall health and wellbeing, which can also lessen your stress experiences
  • Some forms of exercise allow you to be social; other forms can allow meditative states, increase oxygen intake, raise self-esteem & improve quality of life
  • Yoga, Karate, Swimming, Walking, Biking, Non competitive sports like tennis, Hiking, Stretching

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